#Heart4PCOS Advocacy: The Link Between PCOS And Heart Disease [Podcast with Ashley Levinson] - PCOS Diva
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#Heart4PCOS Advocacy: The Link Between PCOS And Heart Disease [Podcast with Ashley Levinson]

With PCOS, there’s an increased risk of hypertension, high cholesterol, depression, anxiety, insulin resistance, diabetes, all things that can put us at risk for heart disease. So, I wanted to start a campaign to make people aware of these metabolic connections.

Ashley Levinson is a well-known PCOS advocate. She joins the podcast to talk about her viral online campaign called #Heart4PCOS which educates women on the connection between PCOS and heart disease.

She wants us to know that PCOS affects many different systems and organs of the body, including the heart. Unfortunately, this is not well known in mainstream health care so she is passionate about spreading awareness.

Learn how you can join in the #Heart4PCOS campaign and advocate for better research and education around this very important issue.

All PCOS Diva podcasts are available on:itunes-button

In February, you can participate in #Heart4PCOS by doing the following:

Post your photo on social media using the following steps:

  1. Wear red & upload a photo 
  2. Use #Heart4PCOS hashtag 
  3. Tag your family, friends, and doctors! 
  4. Post photos between 2/1 – 2/29 

You can also add a frame to your Facebook profile pic:

  1. Click to edit your profile photo 
  2. Click add frame 
  3. Search frames #Heart4PCOS & #TurnTealtoRed 
  4.  Save changes

Listen to the podcast as we discuss:

  • The misnomer is that PCOS is something that occurs in women only in their reproductive years and only involves our reproductive system.
  • How to speak with your doctor about PCOS and your cardiovascular health.
  • What tests are needed to monitor your heart health?
  • How to participate in the #Heart4PCOS campaign.
  • How to turn it red for “PCOS and heart disease.

Resources mentioned:

Ashley on Facebook
Ashley on Instagram
Ashley on Twitter
#Heart4PCOS
Ashley on PCOS Diva Podcast #92

Complete Transcript:

Amy:

Today I have the great pleasure of having Ashley Levinson back on the PCOS Diva podcast. Ashley has been a PCOS patient advocate for over 22 years. She is a retired orthopedic certified surgical first assistant. And Ashley’s advocacy began with the first televised story about PCOS back in 2004 on Discovery Health Mystery Diagnosis. Her advocacy has included starting the viral online campaign which we’re going to be talking about today, #Heart4 PCOS.

Amy:

And in 2021, she became a two-time recipient of the Ricardo Azziz PCOS Challenge Advocacy Leadership Award, and a finalist for the WEGO Health Awards Best of Twitter. Ashley works tirelessly on PCOS Advocacy, she works with PCOS Challenge as the patient advisory board chair of outreach and partnerships. She’s joined the organization as the New York and New Jersey state leader for PCOS Advocacy Day.

Amy:

And recently she was a patient representative in the NIH PCOS workshop, which is a really huge event for the PCOS world. And it was also as she says, one of the biggest honors in her advocacy career. So welcome to my fellow PCOS Advocate, Ashley.

Ashley:

So much for having me Amy, I’m so excited to be here today and be talking with you once again. I’ve known you for years and absolutely love you and love what you’ve done with the community, and supporting patients, and teaching patients. So thank you, it’s an honor.

Amy:

Well, thank you it’s mutual. Actually I don’t know anyone else out there who has worked as tirelessly as you. Despite both of us living with PCOS and having to manage that as well as trying to move efforts of awareness forward. And I wanted to invite you on a podcast here at the end of January to talk about, as I mentioned, one of your big efforts, which is #Heart 4 PCOS. And I want you to tell us more about that.

Amy:

I think there’s this big misnomer that PCOS is something that occurs in women only in their reproductive years. And it really only concerns our reproductive system. And you are working hard to demystify, and I guess I wanted to say like bust the myths around the other really serious symptoms, including cardiovascular disease especially in this month of February. So, tell us about February and what it holds for women with PCOS.

Ashley:

All right, well, first of all, I think you kind of hit the nail on the head and at this point it’s about changing perceptions. Because I was part of that whole group of women that were dealing with infertility and really got to know PCOS through my own journey with infertility.

Ashley:

I did not know when I first started seeing a reproductive endocrinologist, that there were issues outside of just trying to get pregnant that I should be worried about with PCOS. But now since I’ve fortunately had my kids and I’m on the other side of it, I began to realize that the symptoms don’t disappear with age they actually get worse, and the things that we need to concentrate on are the metabolic issues.

Ashley:

Particularly again, for someone like me, where I have a family history of heart disease, a lot of people don’t know that with PCOS there’s an increased risk of hypertension, high cholesterol, depression, anxiety, insulin resistance, diabetes, all things that can put us at risk for heart disease.

Ashley:

So I wanted to start a campaign to make people aware of these metabolic connections. And as we know in February is heart month, and there are a lot of that go on through heart month for women who deal with heart disease.

Ashley:

Heart disease is the number one killer in women, and women with PCOS are the highest at risk group for heart disease, which I don’t think a lot of people realize. So it made sense to me that we needed to start a campaign to bring more awareness and to hopefully end a silent epidemic that many people aren’t aware of.

Amy:

That’s a huge statistic. Do you have some other stats? I know, I see the stat that women with PCOS are four to seven times more likely to have a cardiovascular event.

Ashley:

Yes. So for women with PCOS they are at seven times greater risk for a heart attack than they are at four times greater risk for stroke. They are at increased risk for hypertension, they are at increased risk for high cholesterol, and about 50% of patients with PCOS will become diabetic, or have pre-diabetes, or some form of insulin resistance by age 40, which is kind of eye-opening.

Ashley:

PCOS tends to run in family, so it’s important ask about your family history and because PCOS may cause a predisposition for these cardiovascular events, so high cholesterol metabolic syndrome, hypertension and impaired glucose tolerance.

Ashley:

And often we’re not looking at that or I should say providers aren’t screening that regularly. So patients are walking around literally as ticking time bombs, because they’re basically told, “Okay, you’ve had your kids now just take a few pills or lose weight and eventually you’re going to hit menopause and things will be over with,” which we know is not the case. PCOS is lifelong, and it exists way beyond menopause. And again, we just need to change the perception on that.

Amy:

All right, I think the other thing you’ll often hear is just get a hysterectomy after you’re done having kids and that will take care of the PCOS which-

Ashley:

So actually, I can speak on that because again, as a complication of PCOS I was dealing with abnormal uterine bleeding from severe hormone imbalance. And I had to have a hysterectomy about six years ago, my symptoms actually got worse after my hysterectomy. People think, “You don’t have your reproductive organs.”

Ashley:

These endocrine issues are not solely based on the ovaries and I think one thing that people have to understand is although the ovaries are part of the reproductive system, they’re part of a much bigger picture which is the endocrine system. And it’s these messages that are sent from the brain to the ovaries that cause a lot of the reproductive symptoms, however, they can still exist, even if those ovaries in reproductive system is not there. So-

Amy:

So you mentioned that PCOS symptoms could possibly get worse as you age. Give us some hope for those listening and that’s kind of a scary thought that in my 20s, 30s, I’m already struggling and so it’s going to get worse. I mean, I can tell you that… and we were just sharing our… we’re getting up into the half a century age group.

Amy:

And I can say that my symptoms are better now than they ever were in my teens and 20s. And I owe a lot of that to changing my lifestyle. So I personally think that you can feel better at this stage of the game if you make appropriate lifestyle change, what are your thoughts?

Ashley:

And that’s the key Amy, is that the information, the knowledge has to be there to enable people to make those changes. No doubt if you are doing lifestyle management, if you are on the appropriate medications, if that’s necessary or supplements, or however you decide to treat your PCOS.

Ashley:

If you have a plan in place, yes, it’s easier to, it’s easier I should say, to live a health healthier life to avoid future complications, and to have a better quality of life. The problem is again, that when that information isn’t given to patients and isn’t out there for patients to recognize that these tools and resources are available, you’re just kind of stuck, what do I do?

Ashley:

So what you do, what health coaches do, what nutritionists do, what PCOS experts do, are very important for people that are in our age bracket, to start realizing that they do have the power and the resources and the tool to combat these health issues and basically to prevent future cardiovascular and health risks.

Amy:

So my whole kind of platform, PCOS DIVA is about being a DIVA and educating yourself so that you can advocate for yourself at the doctor’s office. And I think a big push for your Heart Month is educating yourself about the risks, so you can ask and really advocate and at your doctor’s visit to monitor your cardiovascular health.

Amy:

And Ashley, we’ve been doing this for a long time and I know you do too. From time to time, you’ll see a very sad post on social media about a young woman late 30s, even 40s who have passed away from a heart attack or a stroke with PCOS. I mean, it doesn’t happen all that often, but it’s any incident like that is heartbreaking literally, right?

Ashley:

It is and you’d be surprised that it happens more often in our community than not. And in fact, in the past five years, I’ve lost two of my friends in the community to heart disease. One of them was a fierce PCOS advocate and known in a lot of the PCOS groups her name was Angela Sams. And her doctor just kept ignoring all of these symptoms of the metabolic issues and she died from a heart attack.

Ashley:

And another one of my dear friends who spoke at the NIH with me, Dion Taylor, Dion Taylor, she lost her sister, Tumita Green to a heart attack as well. And again, it’s just because they weren’t looking at the metabolic consequences and they were minimizing what PCOS is. And if people keep looking at it as a reproductive or infertility syndrome, we’re going to continue to lose more community members.

Amy:

So for a woman listening today, how do you recommend kind of approaching the topic with their provider?

Ashley:

I think telling their provider that they’ve either seen online, or they’ve done some research, and they’ve become aware that there may be some metabolic risks associated with PCOS and asking their doctor, what type of screenings do you do on a regular basis for PCOS? What type of blood work do you do? Do you check my blood pressure? Do you send me to get an EKG? Question the doctor and tell them, do you think these tests are appropriate and these are my concerns?

Ashley:

That I think is a big thing with PCOS is being able to communicate and having a partnership with your provider in which you can talk about your concerns and they’re able to answer them. And I’ve said to a lot of people, if you have a doctor that dismisses that, that means it’s time to see a new doctor because your wellbeing and your health are important, and you deserve the best care practices that are out there.

Amy:

So what types of screenings specifically, checking cholesterol levels. Do you think that it is appropriate to ask for an EKG and maybe what age or-

Ashley:

I don’t think necessarily you need an EKG unless you are displaying symptoms that may be concerning, but certainly blood work that would include checking your cholesterol levels, checking your A1C your blood sugar levels, even your testosterone levels because high levels of testosterone for long periods of time can also cause some cardiac events as well.

Ashley:

So looking for those establishing baseline with your blood work, to check your hormones, your cholesterol, and also doing screenings for hypertension, because hypertension is a risk factor with PCOS and there’s a higher prevalence. So again, establishing that baseline and then at a minimum, just having yearly blood work and yearly clinical exam to check all these different numbers and features is always a good idea.

Amy:

Yeah, it was just as we’re talking, I just reminded me too, that I had a former client who is now in her early 40s and she reached out to me. She was in the hospital getting ready for quadruple bypass. And it’s sad, but she’s doing great now.

Amy:

She’s really gotten back to a plant-focused diet and lifestyle, not vegan or vegetarian but lots of plant-based foods with lots of fiber and anti-inflammatory, and she’s really doing a lot better. So I just was happy to hear that but lifestyle is so important.

Ashley:

It’s huge, and that’s one thing I do a lot of during “Heart 4 PCOS” month is to offer those tools and resources, and to have people like yourself come on and talk about these tools and these resources, and how they can be effective in helping with symptoms and curtailing future health risks.

Ashley:

I think that’s the biggest factor in wording off a lot for heart disease or diabetes. I mean, it’s not pleasant to think of. It’s not pleasant to talk about, but if we don’t talk about it, we’re giving way to a silent epidemic.

Amy:

Exactly. So tell us what we’re doing to talk about it in February for “Heart 4 PCOS” month.

Ashley:

Well, one of my favorite things and you’ve participated in it a couple of times and I love whenever you do it I always wait for your posts. Is I do a big thing where I ask the community to turn from teal to red. So everybody within the PCOS community puts on their red, especially for red heart day for women’s heart day.

Ashley:

And we use the tag “Heart 4 PCOS” and you see our entire community turning from teal to red it’s wonderful because it’s bringing awareness that patients, women with PCOS are the highest at risk group of women for heart disease. And it brings the community together in a way that we can let our voices be heard, in a way that it’s a fun community event that brings awareness.

Ashley:

And I have been doing it for this’ll be the ninth year that we’re doing it, so that’s the big thing. We also do live events, we do podcasts, we do articles, we work with organizations like Women Heart, and hopefully we’ll be able to work with the American Heart Association, the National Stroke Association, the American Diabetes Association to make a bigger impact this year.

Ashley:

But keep looking because we’re going to be revealing a lot of things. And one thing that I’m really excited about is I am teaming up with PCOS Challenge this year, so really excited about that. And we will be having some celebrity ambassadors this year, so it’s going to be a big year for us.

Amy:

That’s really exciting. It’s come a long way hasn’t it, Ashley?

Ashley:

It has, and speaking about advocacy, a lot of times I have people ask me, “I want to be like you, I want to be an advocate, how do you become an advocate?” It takes time but more importantly, it just takes a willingness to put yourself out there and to share your story. And you just build from that and you keep pushing forward over and over and over again, until more people hear your story and start magnifying that story and start magnifying their voices.

Ashley:

So, the simplest thing you can do is start getting involved in campaigns like “Heart 4 PCOS” and share your story and share why you’re important and why PCOS is important. And, I welcome as many advocates as possible because I am getting up there so I have to start looking at retirement at some point, so we need some new advocates to get in here.

Amy:

I know we have to pass the torch on, right?

Ashley:

That’s right.

Amy:

So tell us that hashtag I guess to look for on social media to get involved.

Ashley:

There are a couple of… it is floating around so you can look at past campaigns. There are thousands of pictures and it’s on Instagram, Facebook, Twitter, TikTok, and it’s #Heart4PCOS” so it’s literally H-E-A-R-T the number four P-C-O-S

Amy:

Excellent. So you know what? I just bought a new red sweater. So I am going to make sure that I get a new picture to you with my new red sweater.

Ashley:

You do not know how excited I am, I cannot wait, I cannot wait. I’m telling you I love your posts. So I’m looking forward to it.

Amy:

Okay, great. And luckily my son is a good photographer, so when he comes home from college over break I’ll have him snap a picture. So Ashley, tell us where we can find out more about the work that you do. I recently saw you were kind of sharing, you had some exciting news about a new site.

Ashley:

Yes, okay. So I can be found on social media. So again, Facebook, Instagram, Twitter, TikTok and my handle is P-C-O-S GURL with a G-U-R-L, so P-C-O-S-G-U-R-L on social media. And I also on most of my profiles, a link treat. And I started up my blog again, and I am sharing a lot of information, a lot of resources, a lot of tools, past interviews that I’ve had with people, I have the past PCOS DIVA interview that I’ve done with you up. So there’s a lot of information and I would love everybody to come and learn and pass the information on.

Amy:

Yeah and again, definitely check out Ashley’s resources. She’s been doing this I think longer than… and consistently than anybody else, and I applaud you for that. It’s definitely a labor of love.

Ashley:

It is and I actually affectionately call myself the PCOS dinosaur, because I’ve been around for so long.

Amy:

Well, you’re not a dinosaur in my book, so-

Ashley:

Thank you.

Amy:

Well, and I hope to see you in person soon, maybe in an Advocacy Day coming up. I hope we can get together again in person.

Ashley:

I hope so too and I hope to see everyone for Advocacy Day this year, because I think we’re actually planning if COVID behaves itself to be back in Washington, D.C. this year, talking to legislators about PCOS. And I can’t wait and I owe you a big hug.

Amy:

Yes. And listeners, if you have not been to Advocacy Day in D.C. it is just an amazing event and super empowering, and it’s just fantastic to connect in person with other women fighting the good fight. So, if you think about it, if we do it again in person, I hope to be there and looking forward to seeing everybody else there too.

Ashley:

Absolutely. And one important thing that I always tell people, you don’t have to have any experience as somebody who does lobbying or knows the ins and outs of government. All you need to do again is have a willingness to share your story and that’s the whole point, is that we go in and we tell our representatives, this is our story and this is why PCOS awareness matters.

Amy:

Well, thank you so much for coming on and sharing about upcoming #Heart4PCOS month. And I look forward to seeing everybody’s turning their teal photos to red.

Ashley:

Me too. I hope it is a wave of teal to red this year. And Amy, thank you so much for allowing me to come on and share my experiences and my campaign with everybody.

Amy:

Well, thanks Ashley. And thank you all for listening. I look forward to being with you again very soon, bye bye.

 

 

 

 

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